Wednesday, 10:00 – 11:30, D1

Sexual and Reproductive Health for Adolescents with Disabilities

Colleen Dodich, MD [email protected]

Objective:

Identify effective methods for the practical application of concepts related to improving the delivery of services for persons with developmental disabilities at the level of the state.

Identify advances in clinical assessment and management of selected healthcare issues related to persons with developmental disabilities.

Notes:  I have no financial disclosures.

Sexual and Reproductive Health for Adolescents with Disabilities

Colleen B. Dodich, MD Assistant Professor Department of Pediatric & Adolescent Medicine

Topics to be Covered

 Puberty and Adolescent Milestones  Gynecological Care of Individuals with Agenda Disabilities  Sexuality in Individuals with Disabilities  Sexual Abuse Potential  Reproductive and Sexuality Education

Normal Puberty

 Normal menses starts approximately 2- 2.5 years following the initial presence of breast buds Puberty and Adolescent  Approximately 90% of Tanner 4 girls have started their menses Milestones  Indicates intact, responsive hypothalamic-pituitary- gonadal axis  Mean age of menarche in the US is 12.5 years (ranging from 9-16 years)  Average duration of cycle 28 days (+/- 7 days)  Average duration of menses 4 days (+/- 2-3 days)  Median blood loss is 30mL/cycle

1 Puberty in those with Adolescent Milestones Disabilities

 Puberty can altered in those with disabilities and  Attaining an adult body capable of chronic illnesses reproducing  Can be altered by disorder itself, or medications used to manage the disorder  Having and maintaining intimate  Medications can also alter sexual function relationships  Neurodevelopmental Disabilities  Managing a range of complex emotions  Cerebral Palsy – begins earlier and ends later  Independently thinking and problem Median age of menarche is over 1 year solving later  Increased risk of idiopathic precocious puberty Incidence approaches 20% in those with spina bifida

Adolescent Milestone Barriers

 Functional limitations (physical limitations)  Participation in fewer social activities Gynecological Care  Involved in fewer intimate relationships  Lack of information on topics such as parenthood, birth control, STDs

Factors Complicating Proper Gynecological Care Gynecological Care

 Communication difficulties  Complete gynecological history  Perceived pain or behavioral concerns  Obtained from adolescent, parent, caregiver  Cognitive limitations  Menstrual history  Anatomic complications  Concerns or abnormalities  Impaired sitting position  Physical examination  Lack of knowledge in regards to gynecological  Recognize that speculum exams are often care NOT indicated in the adolescent population  Caregiver refusal to provide gynecological care  Laboratory Testing as needed

2 Pelvic Exams Pelvic Exams

 Speculum exams are necessary:  Speculum exam may not be necessary for all patients coming in with a gynecological concern Menstrual irregularities (pending history)  Pap testing is indicated: Amenorrhea not because of  21 years and older pregnancy, and prolonged or heavy vaginal bleeding  HIV positive Abdominal and pelvic pain (pending  Immunocompromised history) Persistent, symptomatic vaginal discharges that may be caused by a forgotten tampon, condom fragments, or other objects

Pelvic Exams Proper Hygiene

 Will need to gain trust before performing  May need assistance with menstrual exam hygiene  Will need to describe exam in a way the  May request menstrual suppression patient will understand Request by parent/caregiver or by  May need to adjust positioning for exam adolescent  One-finger bimanual exam  Rectoabdominal examination  Examination under sedation may be needed

Menstrual Suppression IUDs

 Long Acting Reversible Contraceptives IUD (Intrauterine device) Implant  Depo-medroxy-progesterone acetate shot  OCPs (Birth Control Pills)  Sterilization – controversial and fraught with legal-ethical considerations

3 Intrauterine Devices (IUD) IUDs

 Very effective with minimal user effort  Releases either copper or progestin  Copper IUD can stay in place 10 years, progestin IUD for 5 years  Safe in teens and nulliparous women  New progestin IUD does not increase risk  May need to be inserted under sedation of PID or ectopic pregnancy (unlike  Mechanism of action: older Dalkon Shield) Changes in cervical mucus  Contraindications: Abnormal uterine Chronic inflammatory changes and anatomy, an active pelvic infection, thinning of endometrium suspected pregnancy, copper allergy, unexplained abnormal uterine bleeding Direct ovicidal effects

IMPLANT Nexplanon (Etonogestrel contraceptive implant)

 A single rod progestin inserted subdermally in the arm  Hormone is slowly released over at least three years  Among the most effective contraceptives available, surpassing sterilization  Side effects: Irregular bleeding, headache, weight gain, acne, breast tenderness, mood changes  Contraindications: Same as hormonal contraceptives  No data on the use in adolescents with disabilities

Depo Provera Shot Oral Contraceptive Pills

 Injectable, progestin-only contraceptive given every 12 weeks (good compliance in adolescents)  Most OCPs contain both a synthetic estrogen and a synthetic progestin  Mechanism : Suppresses LH secretion which inhibits follicular maturation and ovulation  How they work  Inhibits endometrial proliferation, making it less  Estrogen-induced inhibition of the mid-cycle receptive to implantation surge of LH, preventing ovulation  High rate of amenorrhea long-term  Thickening cervical mucus (barrier for sperm)  Side effects: Menstrual irregularities (improve with  Thinning the endometrial lining of the uterus time), weight gain, headache, mood changes- depression, bone mineral density loss  Impairment of tubal mobility and peristalsis  Patients should have a calcium rich diet, with weight-bearing exercise

4 Side Effects Special Considerations  Estrogen related effects Headaches Breast tenderness  Increased risk of thromboembolic event Nausea  especially in those who are wheelchair bound Weight gain (although not as much as in and have limited mobility past)  Needs to be taken at the same time every day Hypertension  Will still have withdrawal bleeding Bleeding and spotting  There is a chewable OCP available for use in G-  Progestin related effects tubes Fatigue  In progestin-only pills, there is a concern for bone Depression mineral loss Menstrual changes  Especially in those with limited movement/weight bearing exercise ability

Contraindications Contraindications

 Category 1 (no restrictions)  Category 2 (use with caution)  Benign breast disease  Cervical cancer  Benign ovarian tumors  Diabetes mellitus (uncomplicated)  Epilepsy* (but check their medications)  Migraine with no focal neurologic  Family history of breast cancer involvement  Headaches (mild)  Sickle cell disease  Postpartum at or over 21 days  Obesity  Viral hepatitis carrier  Smoker

Contraindications Contraindications

 Category 4 (contraindicated)  Complicated structural heart disease  Category 3 (usually no OCP given)  Cerebrovascular event, Coronary Heart Disease  Gallbladder disease  Deep vein thrombosis or pulmonary embolism  Lactating (6 weeks to 6 months)  Diabetes mellitus (with retinopathy, neuropathy, nephropathy)  Less than 21 days postpartum  Headaches (and migraines) with focal neurologic symptoms (aura)  Medications that interfere with OCP efficacy  Hypertension severe (systolic>160 and/or diastolic >100)  Undiagnosed abnormal vaginal-uterine  Lactation, under 6 weeks postpartum bleeding  Liver disease (Due to drug metabolism)  Hyperlipidemia (uncontrolled, LDL>160 mg/dl)  Breast Cancer  Surgery (involving prolonged immobilization)

5 Extended Cycle OCPs Transdermal Patch

 Ortho Evra

 Include 3 months of “active” pills followed by 7  20 mcg of ethinyl estradiol and 150 mcg of days of placebo pills norelgestromin daily  Essentially, one period every 3 months  The patch is changed once a week for three weeks, followed by one week that is patch-free  Higher risk of breakthrough bleeding  Can be applied on buttocks, upper outer arm,  This decreases over time lower abdomen and upper torso (excluding the  Seasonale, Seasonique breasts)  Same effectiveness as other OCPs  Therapeutic effects are achieved at lower peak doses  Although data is limited, may have an increased risk of VTE compared to OCPs  Possibility of detachment and skin irritation

Intravaginal ring

 NuvaRing  Delivers 15 mcg ethinyl estradiol and 120 mcg of etonogestrel daily  Inserted intravaginally for three weeks and then Sexuality removed for one week  It can be removed for 3 hours during intercourse  Can cause vaginitis, leukorrhea  Adolescent has to be comfortable inserting this  May be difficult for adolescents with mobility issues

Sexuality Sexuality

 A complex phenomenon that involves intricate interactions between:  The quality or state of being sexual  Individual's biological genital sex The condition of having sex  Core Identity Sexual activity  Gender Role Behavior  Physical maturation and body image Expression of sexual receptivity or  Core and profound component of humanity interest especially when excessive  Linked to basic human needs of being liked and accepted, displaying and receiving affection, feeling valued and attractive

6 Myths The Truth

 Adolescents with disabilities are, like all  Persons with disabilities are or should be adolescents, sexual human beings asexual  Attention to their complex medical needs  They are child-like and in need of may overshadow time that could otherwise be spent focusing on their developing protection sexuality  They suppress their sexual needs  Societal and psychosocial barriers may be  They are inappropriately sexual or have more of a hindrance to sexual development uncontrollable urges than the limitations from the disability itself  Adolescents with physical disabilities are as sexually experienced as their peers without disabilities

The Truth

 Individuals with disabilities: Express desires and hopes for marriage, children and normal adult Sexual Abuse sex lives Need education on sexuality Need help managing their sexual health

Sexual Abuse Why are they more vulnerable?  Sexual consent is a complex and legal issue for cognitively impaired individuals  Dependence on others for intimate care  Children with disabilities are sexually abused 2.2  Increased number of caregivers and times more than those without disabilities settings  68%-83% of women with developmental  Inappropriate social skills disabilities will be sexually assaulted in their lifetimes  Poor judgment  Less than half will seek legal or treatment  Inability to seek help or report abuse services  Lack of strategies to defend themselves  Incest represents approximately 40% of reported sexual assault from abuse

7 Signs of Abuse Consequences of Abuse

 Chronic Drug Abuse  Alterations in bowel and bladder  Depression and other mental health patterns disorders  Changes in appetite or sleep  Juvenile delinquency/ youth violence  Change in mood and behaviors  Psychosomatic disturbances (ex.  Decrease in community participation Headaches, Abdominal Pain, etc)  Pregnancy  School failure and drop-out  STDs  Sleep Dysfunction

Lack of Education

 For protection, parents may limit Reproductive and unsupervised social interactions Sexuality Education  May limit any knowledge of sex  Fears that discussions about sex will lead to sexual activity  Educational materials available may not be developmentally appropriate  Actually, when sexual questions are freely discussed, the likelihood of abuse is reduced

Sexuality Education Sexuality Education

 Keep it simple and direct  Sexuality should be discussed routinely and openly  Try multiple teaching techniques  Conversations should be initiated early  Use “teachable moments” and should be age appropriate and  Encourage independent thinking and developmentally appropriate action, decision-making skills and Introduce issues of physical, cognitive boundary setting and psychosexual development  Expose the child to a variety of social  Explore expectations of both the parents situations and experiences and the child  Teach them the power of saying no

8 Sexuality Education Sexuality Education

 Must incorporate the family’s values on  Topics to be covered different issues Sexual Development Personal Modesty Adult Sexuality Sexual Orientation  Best accomplished when parents are Sexually Transmitted Diseases the principle teachers Contraception (including abstinence)  Should offer education appropriate for Health implications of pregnancy the cognitive and functional abilities of Masturbation the child

Sexuality Education Barriers to Education

 Practitioners should cultivate a sense of independence when appropriate  Discomfort on the part of everyone involved  Discuss issues and concerns in private with the child or adolescent  Parents, children, caregivers  Inform the parents/caregivers of the topics discussed  Cultural, religious or personal beliefs  Be aware of the confidentiality  Acute medical and developmental concerns may overshadow reproductive health discussions  Make sure to discuss topics in a way that the patient will understand  Lack of access to age-appropriate peers Anatomically correct dolls  Lack of access to privacy Role Playing  Parents may infantilize their children Frequent Review and reinforcement of  Parents may overlook opportunities for their information children to achieve greater maturity and Provide developmentally appropriate independence educational materials

The Role of the Practitioner The Role of the Practitioner

 Create an environment in which it is safe  Help find ways to optimize to ask questions independence  Discuss physical developmental changes  Be aware of special medical needs and of puberty how it can effect reproductive and  Ensure privacy for each child/adolescent sexual care  Assist parents in understanding how their  Look out for signs of abuse child’s disability can effect behavior and  Encourage sexuality education, starting socialization in the home  Provide appropriate resources

9 Resources References

 Murphy NA, Elias ER. Sexuality of Children and Adolescents with  University of Michigan Resource List Developmental Disabilities. Pediatrics Vol 118 No. 1. July 1, 2006. pp 398-403  http://www.med.umich.edu/yourchild/topics/disabsex.ht  Greenwood NW, Wilinson J. Sexual and Reproductive Health Care for Women with Intellectual Disabilities: A Primary Care Prespective. m International Journal of Family Medicine Volume 2013 (2013), Article ID 642472  Healthy Relationships, Sexuality and Disability  Patel DR, Greydanus DE, Calles JL, Pratt HP. Developmental Disabilities Across the Lifespan. Disease-a-Month. Vol 56 No 6 June 2010; 350-361  Prepared by MDPH and MDDS  Greydanus DE, Rimsza ME, Newhouse PA. Adolescent sexuality and  http://www.mass.gov/eohhs/docs/dph/com- disability. Adolesc Med Clin 2002; 13:223-47 health/prevention/hrhs-sexuality-and-disability-resource-  Savasi I. et al. Menstrual Suppression for Adolescents with Developmental guide.pdf Disabilities. J Pediatr Adolesc Gynecol (2009)22:143-149  Menstrual manipulation for adolescents with disabilities. ACOG Committee  SafePlace (Safety Awareness Program) Opinion No. 448. American College of Obstetricians and Gynecologists. Obstet Gynecol 2009;114:1428–31. Reaffirmed 2012.  http://safeplace.org/about/programs-and-  Greydanus DE, Omar HA. Sexuality Issues and Gynecologic Care of Adolescents with Developmental Disabilities. Pediatr Clin N Am 55 (2008) services/disability-services-asap/ 1315–1335

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